Coping with molar pregnancy, persistent disease or choriocarcinoma

It can be very difficult to cope with a diagnosis of GTT, both practically and emotionally. At first, you are likely to feel very upset, frightened and confused. Or that things are out of your control. It is very important to get the right information about your type of GTT and how it is best treated. People who are well informed about their illness and treatment are more able to make decisions and cope with what happens.

There are different types of gestational trophoblastic tumour (GTT) all of which have difficult names. Because these tumours are rare, you may not have heard of them before. And other people probably haven’t heard of them either. So there is a lot to take in and learn. You might need chemotherapy even if your tumour is not thought of as a cancer. This can be hard to understand and difficult to explain to your family and friends.

The specialist treatment centres have experienced staff who will explain things to you and answer any questions you have. They have booklets that you and your family can read. If you are having treatment at these centres you will meet other women in the same situation, which is another way of getting support and sharing information.

Coping with a diagnosis of any type of gestational trophoblastic tumour is difficult. You are likely to feel a whole range of emotions. If you thought you were pregnant, you will be trying to accept and cope with the loss of your pregnancy, as well as trying to understand your diagnosis. If you have been pregnant your hormones may also be changing, and this often leads to changes in mood.

It can take time to adjust to what has happened. So try and give yourself that time. Try and talk to the people close to you about how you are feeling. Then they’ll be able to understand things better and support you as much as possible.

GTT and its treatment may cause physical changes in your body. These changes can be very difficult to cope with and may affect the way you feel about yourself. Such changes can affect your self esteem and the way you relate to other people, especially close family and friends. Another problem you may have to cope with is feeling very tired and lethargic a lot of the time, especially if you have chemotherapy treatment. There is information about fatigue and cancer and treating cancer fatigue in the section on coping physically with cancer.

If you are having a sexual relationship, one or all of these changes may affect your sex life. There is information about changes in your sex life in the coping with cancer section of CancerHelp UK. If you want to try again for a baby it is natural to wonder about when you will be able to do that and whether you are at risk of another GTT. There is information about these issues and contraception on our page about fertility after a GTT.

As well as coping with the fear and anxiety that a diagnosis of GTT brings, you may also have to work out how to manage practically. There may be money matters to sort out. You may need information about financial support, such as benefits, sick pay and grants. Who do you tell that you have a molar pregnancy or choriocarcinoma? And how do you find the words? You may also have children to think about. CancerHelp UK has information about talking to people about your illness and how and what to tell children. One lady told us about telling her son she was ill

"I waited until I knew more about my diagnosis and treatment before telling my 10 year old son. My husband and I worked on our instinct and what we knew of our son to help us do this. We talked to him when I was at home before chemotherapy treatment.We explained that I was poorly and needed some treatment to help me get better".

Just try to remember that you do not have to sort everything out at once. It may take some time to deal with each issue.

You may have to travel a long way for your treatment at a specialist treatment centre. You may find that it is too far for your family to visit you in hospital very often, which may make you feel isolated. You may have a lot to sort out before you go for treatment. The staff at the specialist centre will be a good source of advice and support. They can help you sort out your transport to and from the specialist hospital, and give you advice about getting financial help if you need it.

The coping with cancer section of CancerHelp UK has lots of helpful information. There are sections about

• Your feelings
• How you can help yourself
• Who else can help you?
• Mortgages, pensions, loans and insurance, including travel insurance

If you would like more detailed information about coping with GTT, contact one of the organisations on our GTT organisations page. They will be happy to help. Some have free factsheets and booklets they can send to you. They may also be able to put you in touch with a support group. There is also a GTT reading list. You can also find details of counselling organisations that can tell you more about counselling and help you find sources of emotional support in your area.